In May of 2015 I was hanging out in a bar with David Arons, the now CEO of the National Brain Tumor Society. We were talking about brain tumor pathology and I was grilling him about grade II astrocytomas, more specifically, astrocytomas with “gemistocytic properties,” because that is what I have.

David said the World Health Organization (WHO) was working on an audit of central nervous system tumors and that over the next year new information would be released about the classification of brain tumors.

To say my interest was piqued would be an understatement, and over the following months the WHO audit simmered under my day-to-day thoughts. Every few weeks or so I Googled key phrases in hopes I would run across new news about the audit, but as a layperson I found nothing.

#Neuropath

Last week I learned about a new hashtag ontology used by pathologists on Twitter. By searching #neuropath I starting learning some pretty sweet stuff about brain tumors, and within 24 hours I stumbled across live tweets popping up from a pathology conference that a layperson like myself would not normally have access to.

And then I found it–what I had been looking for over the better part of the last year: clues about the WHO brain tumor classification study.

For example:

I was shocked. And excited. And hungry for more information.

Is your diagnosis the same as it was last year?

The WHO classification of CNS (central nervous system) tumors has been updated a few times over the last 36 years, starting in 1979 (the year I was born), then again in 1993, 2000 and 2007 (the year before I was diagnosed).

After exhaustive searches in #neuropath I stumbled across a fantastic slide deck by Eyas M Hattlab, MD, from the Indiana University School of Medicine (dated November 2015) that corroborated what I was learning through the live tweets from the pathology conference.

My intent is not to ruffle feathers, but rather alert engaged patients such as myself that there are some changes coming to future classifications of brain tumors–the most significant of which is that the diagnosis of an oligoastrocytoma mixed grade tumor will not happen in the future. You will either have an oligodendroglioma or an astrocyoma. The end.

See this handy chart.

glioma_chart

Why is this change happening?

In June of 2015 I wrote a post predicting that “Everything you thought you knew about your brain tumor diagnosis is going to change,” which was about advances in personalized medicine. Over the past few years brain tumor pathologists have been sequencing the genomes of brain tumors and have found that the results of these tests predict the median survival times and other characteristics of the trajectory of a patient’s experience. This information leads to treatment recommendations that are specific to each individual patient.

No longer is one person with a grade IV astrocytoma (aka glioblastoma) treated the same way as another person with a grade IV astrocytoma. We are treated as individuals.

As more and more pathologists and doctors begin treating patients based on the genome of their tumor it only makes sense for the WHO to update their classification of CNS tumors. Because science.

2016 CNS highlights

Some of the major changes in the 2016 CNS WHO (that us laypeople can understand) includes:

  • A major restructuring and incorporation of genetically defined entities for: diffuse gliomas, medulloblastomas, and embryonal tumors (including the removal of the term “primitive neuroectodermalvtumor (PNET)”)
  • New genetically defined ependymomas
  • New distinguishing characteristics for pediatric tumors
  • New types of brain tumors
  • The addition of “brain invasion” as a criteria for atypical meningiomas

I am not a doctor. I am not a scientist. I am just a really engaged patient. If you are interested in this stuff as much as I am, I highly recommend you view Dr. Hattlab’s slides which are available as a PDF here.

What is my true prognosis?

I’ve said this before, but as a person who had brain surgery in 2008 and 2009, I might as well have been diagnosed in the stone age. The genome of my tumor has never been sequenced and knowing now that this option is available I feel left out.

In early January I had my six-month MRI and I had the chance to talk with Dr. L, my neuro-oncologist. I talked with him about the genome sequencing and he said yes, he orders that very test for all of his new patients. I asked him if he could check to see if he still had my tumor tissue on file so he could run that same test. (I donated tissue for a study at UCLA and UCSF, so I knew quantities were running low.)

He said, “Why would you need that test?”

I pointed to the computer screen in his office which showed a picture of my brain from only hours earlier. “Because of that. I still have cancer in my brain. If you weren’t concerned about me, you wouldn’t keep me coming back here every six months.”

Dr. L made a call to whomever holds all the tissue in the hospital and confirmed that there is still a slide available somewhere with a piece of my brain in it. After he went through all that hassle I didn’t press him about the genome sequencing.

But now I am starting to wonder. I wonder what I have. Looking at the diagram above I want to know if I am IDH-mutant or IDH-wild type, and if I have the co-deletions or not.

In this day and age, where women are empowered to get tested for breast cancer genes (BCRA1 and BCRA2) and undergo preventative double mastectomies in the chance that they might develop breast cancer in the future, why can’t I get my own brain tissue tested to understand the prognosis of a cancer we know I have?

The mic is dropping… To be continued.